First, thanks to everyone for being a part of this diverse support group. I recently discovered it.

What are the advantages/disadvantages for removing or keeping the last few inches of colon and rectum after having a permanent colostomy?

Here is my situation. I am 45 yrs old. I was diagnosed with a stage II rectal cancer in Aug of 2009. The tumor was 10cms long and located 2cms from the verge. In October, I began 6 weeks of chemo and radiation. In January 2010 I had a laproscopic and manual lower anterior resection. Tumor was re-diagnosed as stage I. Then 4 1/2 months of post op chemo. Later, an infection from the surgery eventually created a fistula compromising my colon. Then in April 2011 I had fistulotomy which allowed me to have a reversal in May 2012. In my case, the reversal has not been successful.

Please forgive me since I also posted this topic on the UOAA board. I hope that's not too annoying.

Sorry, I wish could provide an answer, but I'm just not sure (I had my entire rectum removed, but the sphincters were saved).

redscott wrote:When in April 2011 I had fistulotomy which allowed me to have a reversal in May 2012. In my case, the reversal has not been successful.

When you say "has not been successful," are you referring to difficulty managing your bowels, or is there some other problem necessitating "reversing the reversal"? If it's managing your bowels, I would highly suggest giving it more time. You had your reversal about 8 months ago. I would give it at least a year before I even remotely entertained the notion of reversing the reversal.

FWIW, I was still having a lot of bowel management issues when I was 8 months post-reversal. Things became manageable with a lot of effort, but I now regulate my bowels with a daily enema. It's worked wonderfully. I spend about 30 extra minutes each morning getting emptied out and go about my day. I eat almost anything that I want (spinach and a few other things are still off limits). Not only have I not had an accident in nearly a year, I haven't had to use a public restroom for a #2.

Shane - I think we've talked already, but I'll share what my experience was with leaving or taking out my rectum.

I asked my surgeon to remove my rectum - because I was worried about the "slime" issue that I'd read about. I'd read that some folks w/colostomy's would get occasional slime leaking out of their rectums and that didn't sound too appealing. My surgeon however, said this was not something she would recommend or do (removing my rectum). She had several reasons for her position -

1) That part of my body received radiation AFTER my original surgery - and the radiation literally makes this tissue hard. Like literally 'hard' - and difficult to remove. She said if there was cancer there - i.e. a local recurrence, then yes, they would remove that area. But as it stands, best to leave well enough alone.

2) Without having to remove my rectum, there was a good chance she could do the surgery laproscopically (to give me a permanent colostomy), which meant a much faster recovery period, less chance for infection and less time in the hospital.

I trust my surgeon completely, so although I was apprehensive, I went with her advice. She was able to do the surgery laproscopically (though she didn't know until she got in there if it would be possible) and this resulted in a MUCH faster recovery - as she predicted. Honestly, I couldn't believe how fast I bounced back from this surgery.

AND - I have had NO problems at all with slime. I couldn't figure this out - but then one day while talking with my Nurse Practitioner at my OB/GYN's office, she said it's probably because the radiation I received in that area basically killed off any tissues, cells - whatever it is - that creates the slime. In any event - I'm 1 1/2 years post surgery now and I've NEVER had slime.

I've also talked to a lot of folks who had their rectums removed as part of their original surgery - where it simply couldn't be saved due to size and/or location of the tumor. Most of these folks have a MUCH longer recovery, problems with sitting, etc. - I had none of those issues with either my very first surgery (which removed the rectal tumor); or the permanent colostomy surgery.

I'm one of those people that had my rectum removed during that 1st surgery to remove my rectal cancer. As a result of radiation and the damage it did to my rectal muscles, I had no rectal control. I was tied to the house/toilet anytime I ate. It was not uncommon for me to have my first meal of the day at 3:00 or 4:00 pm in afternoon, when I knew I was home for the day. And many morning, I did not make it to the bathroom in time.

I knew I was going to be losing some of my rectum and all of my rectal muscles. My surgeon was willing to recreate rectal muscles by taking muscles from some where else. The goal was after a year of training these new muscles was to get to 3 bm daily, but the truth was I could end up with 10+ bm daily and that would be my normal. Gee, I was already there and did not like it. I would have accept it if that was my only option. But my surgeon sent me to an ostomy nurse and there my husband and I learn about a "colostomy". After we left that ostomy nurse, my husband said, you have choices now, I will support you in what ever your decision is, but the good news is, you do have the option of getting your life back. I wanted my life back, I wanted that" bag". I call my surgeon the next day, told her to take all that she wanted, just get "all" of the cancer.

Because it was my decision, I had very little adjustment period, actually, within weeks of getting it, I was getting my old life back, I spent more time recovering from the surgery, than adjusting to the colostomy. Today I can eat anything and not worry how it will effect me, I can be gone all day and not worry if my bowels are active. Doctors love to pick my brain on this issue and I'm more than willing to talk to them and to my kids friends about this subject.

As a side note, I was home about a week following my surgery, my teenage daughter had a friend sleeping over when I pass the "biggest" and "loudest" fart noise through my stoma. My daughter froze and wanted to crawl into a hole. The friend looked at me not knowing what to do. I explained, I had surgery recently (she of course know this), I told her I was passing gas as part of my recovery and if my surgeon had heard that she would have been very proud of me. Talk about turning an "uncomfortable situation" into a "positive situation". The friend's response was here Dad did the same thing recovering from his last surgery and it didn't bother her at all.

Good luck, for me getting the colostomy was the best decision. I will be celebration 9 yr since my diagnoses in a few months, so yes, my surgeon did get all the cancer it that surgery 8+ yrs ago.

Wow - I have such chemo brain. I should clarify. During my first surgery, they removed my entire rectum. The part I wanted "removed" when I later opted for a permanent colostomy was from my anus to where my colostomy was; so I'd basically have a Barbie Butt.

My tumor was in about the same location as yours, but much smaller (2-3 cm). In my case, I had low anterior resection and temporary ileostomy. I'm now a year out from the reversal, and while bowel function isn't normal yet, it appears to be heading that way.

Without knowing more details, it's hard to say what the reasons are that you would need a colostomy. Before going ahead, be sure to get another opinion. It seems to me that the approach the doctor is taking might be too aggressive. While in my case the recovery process from having a low rectal tumor hasn't been a picnic, with patience things are improving and I will update this forum with more details of the whole process in the future as I haven't seen much in the way of postings from others on how the recovery process works.

My surgeon did an excellent job. (Kim Lu at Oregon Health and Science University.) He did not do a J-pouch. I asked him about it, but his opinion was that it creates more problems than it solves except in cases where the patient has a very small diameter colon. Infections are one of the main risks. Now that I'm more into the recovery, I see that the lower part of the colon is stretching out and behaving a lot more like the old rectum used to. So while skeptical at first, I am now a believer. You may be able to resect the J-pouch portion and end up with better function as a result and lower infection risk too. I have not had any infection issues to speak of.

Another thing to consider is that retaining the rectal tissue could help in the future if reconstructive surgery advances. It is now possible to make a bladder from a person's stem cells, and in the not so distant future it may be possible to make colon or rectal tissue too. If you keep what you have, it could make the process easier. For younger people this is something to keep in mind. As long as the cancer risk is minimal I would try to keep any healthy tissue.